Quality of life of children with Phenylketonuria at primary health care center in Cairo Egypt: an exploratory cross-sectional study

Afifi, Zeinab E. M.; Seddik, Salma A.; Eldaleel, Mariam M.A.; Fatah, Shaimaa A.M. Abd El

doi:10.1080/17450128.2022.2129120

Cited by 4 publications

(3 citation statements)

References 30 publications

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“…The results revealed that children of younger parents have higher total scores of difficulties and higher impact scores and younger children were more affected by the difficulties they face. another Egyptian study reported different findings as follows PKU children aged five years old and more had low scores in physical, cognitive, social, and psychological domains of quality of life, and in contrast younger children had better scores in all domains (47) . Findings also revealed highly statistically significant positive correlations between total score of DASS, total score of difficulties and total impact score.…”

Section: Discussionmentioning

confidence: 92%

Caring for A Child with Phenylketonuria: Struggles and Psychological Well- being of Parents and Children

Aboelela

Hanfy²,

Moustafa³

2023

Tanta Scientific Nursing Journal

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Background: Phenylketonuria is a genetic disorder resulting from lack or inadequacy of phenylalanine hydroxylase enzyme activity. Caring for and making nutritional decisions for a child with phenylketonuria puts a great deal of stress on the parents. Moreover, the financial and psychological burden of the disease as well as its chronic nature could affect the psychological well-being of both parents and their children with phenylketonuria. Aim: to assess the struggles and psychological well-being of parents and their children with phenylketonuria. Subjects & Method: a correlational descriptive study design was conducted on of 145 parents and their children with phenylketonuria. Tools: three tools were used to collect the necessary data for the current study, tool (I): Self-administered questionnaire to collect bio-sociodemographic data, tool (II): Depression, Anxiety, and Stress Scale, tool (III) The Strengths and Difficulties Questionnaire. Results: it was found that 17.9%, 29%, and 15.9% of the participant parents have extremely severe levels of depression, anxiety, and stress respectively. The results also reveal that 64.8%, 59.3%, 53.1%, and 58.6% of the studied children have emotional, conduct, hyperactivity, and peer problems respectively. Moreover, 62.8% of the studied children have a negative impact on different areas of their everyday life related to the difficulties they have. Conclusion: the studied parents struggle to provide care and special foods for their children with phenylketonuria. Behavioral and psychological difficulties facing children with phenylketonuria affect the psychological well-being of their parents. Recommendations: further qualitative studies are needed to provide deep insights into challenges perceived by parents of Phenylketonuria children. Designing and implementing training programs for parents to improve their coping strategies and psychological well-being is mandatory.

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Section: Discussionmentioning

confidence: 92%

Caring for A Child with Phenylketonuria: Struggles and Psychological Well- being of Parents and Children

Aboelela

Hanfy²,

Moustafa³

2023

Tanta Scientific Nursing Journal

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“…Despite the availability of clear treatment options, the prognosis of Phenylketonuria varies and requires continuous treatment from the neonatal period, with lifelong treatment recommended [36]. Surveys show that children over the age of ve score poorly in all quality of life domains, and that dietary management of Phenylketonuria places a nancial burden on nearly two-thirds of families with affected children [37]. Parents of children with Phenylketonuria also experience signi cant stress raising their children [38].…”

Section: Discussionmentioning

confidence: 99%

Attitudes of Chinese health professionals toward termination of pregnancy for fetal anomaly: a cross-sectional survey

Liu

Wang

et al. 2023

Preprint

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Background:This cross-sectional study explores the attitudes of Chinese health professionals toward the termination of pregnancy for fetal anomaly (TOPFA) based on four case scenarios. The study aims to identify the factors that influence their attitudes and provide insights to formulate norms and strategies for prevention and treatment of fetal anomalies. Methods: A convenience sampling method was employed, and 750 valid questionnaires were collected from 14 prefectures and cities in central China. Descriptive statistics were used to analyze the data, and binary logistic regression was used to determine associations between health professionals’ attitudes toward TOPFA and sociodemographic and other variables, expressed as the odds ratio (OR) and 95% confidence intervals (CI). Results: The study found that 63.5% of health professionals approved of the birth of a fetus with cleft lip and palate, while 36.5% opposed it. Similarly, 39.7% approved of the birth of a fetus with phenylketonuria, while 60.3% opposed it. The percentages of those in favor of and against the birth of a fetus with precocious heart disease were 45.5% and 54.5%, respectively, and those for and against the birth of a fetus with missing fingers were 50.8% and 49.2%, respectively. The top three factors that influenced the attitudes of health professionals toward the birth of a defective fetus were "the impact of the fetus' own disease on its physical function and growth," "the severity of the fetus' own disease," and "the professional assessment of the indications for treatment of the fetus' disease and related professional advice." The majority of health professionals (75–78%) preferred joint decision-making by parents regarding the right to decide whether a fetus with birth defects will be born. Conclusions:This study is the first case-based study in China to examine the attitudes of Chinese health professionals toward TOPFA. It highlights the need for professional training including in ethics and medical strategies related to birth defects prevention and control for health professionals at all levels. The findings of this study provide valuable insights for formulating norms and strategies for the prevention and treatment of fetal anomalies in China.

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“…Regarding phenylketonuria, despite the availability of clear treatment options, the prognosis varies, and continuous treatment from the neonatal period, with lifelong treatment recommended ( 27 ). Children over the age of five score poorly in all quality of life domains, and dietary management of PKU places a financial burden on nearly two-thirds of families with affected children ( 28 ). Parents of children with PKU also experience significant stress raising their children ( 29 ).…”

Section: Discussionmentioning

confidence: 99%

Attitudes of Chinese maternal and child health professionals toward termination of pregnancy for fetal anomaly: a cross-sectional survey

Wu,

Liu,

Wang

et al. 2023

Front. Public Health

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ObjectivesThis study explores the attitudes of Chinese maternal and child health professionals toward the termination of pregnancy for fetal anomaly (TOPFA) based on four case scenarios and further identifies the factors that influence their attitudes.MethodsThis cross-sectional study, conducted from February 14–21, 2022, aimed to explore the attitudes of maternal and child health professionals toward TOPFA in Hunan Province. We targeted health service institutions across 14 prefecture-level cities and the autonomous prefecture. A questionnaire was made available online and shared via the instant communication platform, WeChat. Participants were recruited through the same platform and completed the survey online. Descriptive statistics were used to analyze the data, and binary logistic regression was performed to determine factors affecting the health professionals’ attitudes toward TOPFA, expressed as the odds ratio (OR) and 95% confidence intervals (CI).ResultsThe study found that 63.5% of health professionals approved of the birth of a fetus with cleft lip and palate, while 36.5% opposed it. Similarly, 39.7% approved of the birth of a fetus with phenylketonuria, while 60.3% opposed it. The percentages of those in favor of and against the birth of a fetus with precocious heart disease were 45.5 and 54.5%, respectively, and those for and against the birth of a fetus with missing fingers were 50.8 and 49.2%, respectively. The top three factors considered by health professionals when agreeing on TOPFA were “the impact of fetal disease on fetal function and growth,” “the severity of fetal disease,” and “the assessment of indications for fetal disease by professionals and related professional advice.” The majority of health professionals (75–78%) preferred joint decision-making by parents regarding the right to decide TOPFA.ConclusionOur study indicates that the attitudes of health professionals toward TOPFA can differ significantly depending on the specific birth defect under consideration. Notably, the majority of health professionals prioritized “the impact of fetal abnormalities on fetal function and development” when deciding their support for TOPFA, advocating for the decision to be a joint one between the parents. Additionally, factors such as religious beliefs, professional training, age, and job title appeared to influence these attitudes toward TOPFA. Our findings could serve as a reference point in the development of guidelines for the prevention and management of birth defects.

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Quality of life of children with Phenylketonuria at primary health care center in Cairo Egypt: an exploratory cross-sectional study

Cited by 4 publications

References 30 publications

Caring for A Child with Phenylketonuria: Struggles and Psychological Well- being of Parents and Children

Caring for A Child with Phenylketonuria: Struggles and Psychological Well- being of Parents and Children

Attitudes of Chinese health professionals toward termination of pregnancy for fetal anomaly: a cross-sectional survey

Attitudes of Chinese maternal and child health professionals toward termination of pregnancy for fetal anomaly: a cross-sectional survey

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